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Lacamas Life Magazine
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When
Family Matters Matter - How to be the Best Patient Advocate
“I have a family member who is sick, what can I do to help?” What a great question to ask your doctor or medical provider! Having a family member get diagnosed with a serious medical problem is stressful. It changes the life of the patient and challenges the people around him or her. Disease or illness changes the lives of everyone around the person affected. That disease may be diabetes, heart disease, arthritis, a stroke, or a diagnosis of cancer. That family member may be a spouse, significant other, son or daughter, father or mother, grandparent or great grandparent. That person may be a distant family member, or it may be a close friend who you have always treated like a family member and want to help.
Not everyone in the beginning wants to talk with others about their medical problems. For some it may come from a desire for privacy or modesty. They may have fears of not wanting to burden someone else with their problems or their feelings about it. They may have difficulty accepting the diagnosis, and they may feel uneasy showing any signs of weakness or loss of autonomy to their family and friends. For others, they may not have been in the role of the patient very often and have not learned how best to advocate for themselves. They may feel angry and resentful and have lost focus on what they should be doing and avoid seeking medical attention. They may feel guilty and anxious, they may be blaming themselves for the medical problem at hand and not want others to know how they feel or to blame them as well. For example, they know their smoking led to their lung cancer or emphysema, their alcohol intake led their liver disease, or their excess sun exposure gave them skin cancer, and now they feel helpless. What a burden that guilt can be to carry! They may become sad and depressed when the window back to a higher quality of life does not seem to want to clear.
To help a family member, we must all begin by talking. Only by talking can we open our eyes to try to see what others might be seeing. Only by talking can we shed some of our own fears and worries and find out what we can do better to help the patient family member. In addition to talking, we must be good listeners. People are often not looking for a lot of advice from family members and have a hard time with what might be perceived as being told what to do. However, many people do feel better when they can share their thoughts and feelings and yet know that they are not going to get answers, just understanding. We may also do well to share without talking. That may be in the form of a written letter, a card, a song, a poem, or a painting. The ability to show how much you care for a family member can come in many forms.
It helps to acknowledge to the family member who is ill that you want to help, but that you recognize that he or she may have some difficulty opening up in the beginning or knowing how others can best help. Different family members and friends may have different roles in how they may advocate for the patient. By talking with one another, you can better define these roles and distribute responsibility. One person may become the led advocate, yet all family advocates should be recognized for the roles they play including children, and especially young children. One family member may help out with the financial concerns, while another may be help to buy food and provide help for transportation when needed. Another family member such as a teenager might take care of chores around the house or in the yard. A young child might feel particularly stressed a react differently if a parent or sibling has a major illness as much attention may be drawn away from him or her. Giving the child the role to draw the pictures or sing the songs may fulfill a need and bond the family even closer. It hurts to feel helpless, yet everyone who wants to can find a role that can fit. Most people find that if they can get to the level of being able to talk about their medical problems openly and freely with their family and friends, they will feel closer to each other and feel their lives are more enriched.
Ideally, one family member may take the lead on the medical issues and accompany the patient to medical appointments. The patient’s primary care provider is there to help open that door to improved health and well-being and should be the patient’s most ardent advocate! When a person develops a major illness, it helps if they already have an established trusting relationship with a primary care provider. However, if they have avoided the doctor for some time, the family advocate can really be a big advocate here by helping them to get established with a new provider of choice.
While we gain much insight by taking a medical history directly from a patient and by examining the patient for disease signs and symptoms, we also benefit greatly from the additional information provided by a family member advocate. There are times when illness is incapacitating enough that the patient is unable to give a lot of medical or social history. This situation is not that uncommon in the hospital setting where illness may reach a level of serious to critical in nature.
The following are the areas the doctor or medical provider may use to build a knowledge base about a patient when he or she comes in for a medical appointment:
Current medical problem(s): More often a patient may be complaining of a symptom or series of symptoms that may point to a specific disease or syndrome. Having the patient write down his or her symptoms can be helpful as it is not uncommon to forget some concerns if multiple symptoms exist. Prior to a medical appointment, we give our patients a questionnaire to help prompt some thinking about this even before the appointment begins.
Past medical problems: We may not know all of the medical problems that a person might have had in the past or that are current, be it helps to be familiar with the major medical issues that need to be addressed. For the very motivated family member, there are many ways to learn more about the diseases or medical problems of concern. Information about medical diseases can be obtained from your primary care provider. Much information can be obtained from respected medical websites on the internet. For problems such as cancer and many of the major medical problems that we all may face in time such as hypertension, heart disease, lung disease, kidney disease, etc., there are excellent resources available from various national organizations such as the National Institute of Health, American Cancer Society, and others. Many of these organizations have patient-friendly materials. We use an electric medical record (EMR) in our clinic and we are able to provide our patients with much of this information during appointments. The realization is that everyone must spend time to learn about medical problems, and to be a good advocate for a family member in need means doing a lot of reading!
Medications: Know what medications are being taken. Have the primary care medical provider make a list for you. Bring the patient’s medication bottles in for the appointments, especially if it is a first appointment. Have that medication list updated at every office visit. If the patient has many medications on that list, keep a list for yourself and a list together with the patient. We use our EMR to provide a list at the beginning of the appointment for patients that have been seen before in the clinic and provide an updated list if changes have been made. Ask the primary care provider and the pharmacist about any questions concerning the medications. It is better to know than not to know. We can lessen the fears and concerns for the patient when they know others are looking out for their needs and responsible use of medications.
Medication allergies/intolerances: Help to know what medications should not be taken or taken with caution. We recognize in medicine that medications can provider great benefit but also can lead to harm. Some medications have caused severe reactions for some patients. It would be ideal to always have a list of medication allergies on the person and with others so that there are no risks for the patient being exposed again in the future.
Family history: Sometimes this is one of the greater challenges to obtain as many family members do not always share their medical history with other family members! Family history provides clues to help in early screening for some diseases such as heart disease, diabetes, and cancer as well as others. Sometimes it may also be an enriching experience for a family member advocate to find out more about his or her own family history as well during the patient encounter in the clinic.
Social history: We recognize in primary care medicine that the care of the patient should not only be about disease but about the whole person. What a person does and what they have done in life may have bearing on their health and happiness. Nobody likes being asked, but lifestyle habits may also have good and bad effects to the whole health picture. To know if some smokes cigarettes or drinks alcohol should never be to pass judgment in the clinic office, but to help identify areas that the medical provider can advocate to change habits that may improve health and well-being.
We may wait and become paralyzed to bad news such as a serious medical diagnosis, or we may empower ourselves to change to the situation that come before us in a way that we can keep up our quality of life as much as possible. There are times when we need help to make those changes. Having family and friends that want to advocate can help bring back hope and meaning to a patient’s life. Make sure to get help from his or her primary care provider as the resources can broaden and support can grow. The desire to help others is one of the great traits we have as human beings, and the willingness to do so one of the great gifts we have to give to society as a whole.
Respectfully,
Michael C. Liu, MD
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